Loving Lucas - The Journey of Our Little Man with Down Syndrome

1/27/25 ER Visit 10am - at pediatrician office,  temp 101.1, took flu & covid swab 11am - called back with results of swab,  positive for influenza A 11:30am - Gave him 2mls of acetaminophen  6:30pm - noticed Lucas was breathing fast,  decided to take him in. Also thought his hands and feet looked a bit purple  7pm - in the car 8pm - checked into ER 8:15 - got into triage room 100°F temp Got suction - got a little out. Mostly clear. Saw doctor, definitely working to breath,  had respiratory person come in. She wants to put on low level oxygen just to alleviate breathing heavy. Oxygen saturation is good 8:35 - got into room 12 Saw doctor,  confirmed they are going to try some oxygen and observe him for a while 9pm - deep suction, he's been eating well. 9:30pm - they think he's breathing a little better after the suctioning. Holding off on oxygen for now. 10pm - his color looks much better,  his fever is down to 99 and hes breathing ...

Dear Family and Friends, It's been a couple months since I sent an e-mail out and I have so many salutations! Lucas turned 9 months old in November, Fernando turned 50 in November & had gallbladder surgery last week. Merry Christmas & Happy New Year! Lucas had his 2nd Auditory test for his ears after the new year and his hearing is a bit worse, so when we follow up with his ear, nose and throat doctor in March we'll also be checking to see if they think he has enough fluid in his ears to recommend that he gets tubes in his ears. Lucas is actually currently sick with something effecting his sinuses. He had a couple ER visits recently about a week a part. He first got sick with a cold and minor virus, then a week later I think he got something else that has effected his sinuses. We ruled out the flu or RSV on the second ER visit, but other than that. It seems that he just needs time. I'm very proud to report that Lucas is so very close to sitting up on his own. He wor...

Hey Guys, Just providing an update for those interested. :) I appreciate you coming here to get updates so I don't have to repeat a story. Lucas was sick last Monday (12/30) see last post.  I gave him a very small dose of antibiotics once a day for 5 days. I would say he did really well up until Sunday night. We expected that if he was going to get bad symptoms they would have happened by Thursday.  So all that being said I suspect what he is experiencing now is something new. Sunday night I noticed he wasn't drinking his bottle, I thought there was something wrong with the flow, maybe the nipple but then I realized he might not be able to breathe out his nose. I suctioned him really well and with a saline rinse and then he ate more normally. I've had to suction him more often before I feed him since Sunday. And that brings us to last night (or very early this morning,  2:30am to be exact). I woke up with him and he seemed to be snorkely so I suctioned him really well rig...

Hey Guys, for all you checking in on this update, thanks for your prayers. At 1am Lucas woke up crying and we were able to soothe him but he was breathing abnormally fast. After several minutes of him not settling down and the heavy breathing staying elevated we decided to take him into the ER at Seattle Children's. He continued to sound pretty stuffed up and sound snorkely ("strider" is the medical term) He was breathing at least twice as hard as he normally does especially in the car and had a significant strider so we were glad we brought him in. Luckily Fernando's family (parents and brother) are staying with us over the holiday so we could just had to the hospital without waking the girls.  It is only fitting that as I was checking him into the (luckily) empty ER @ approx 2:15am, his breathing and strider calmed down and hes breathing more normally. As I write this they got him into a room in the ER, they suctioned out his nose really well, and took a...

Dear Family and Friends, I have a couple months to make up for, I didn't post when Lucas turned 7 months old. Here are his 7th and 8 month old photos together. Our October is busy with Natalie kicking off the month turning 5 on October 10th, then Fernando turning 50 on October 23rd and now I'm writing you on my birthday! Lucas continues to grow and I just recently had a check in with his heart and his VSD (hole in the lower part of his heart) is all but closed and, long story short, that means that he will have his heart surgery between 2-3 years old rather than in the next 6 months! So that's good! If only because the surgery has a higher chance of being successful the bigger he is when he has the surgery. Lucas as a 7 month old is solidly rolling over, he's sitting in his bumbo seat a lot which give him support until he can sit up on his own and he's eating with us during meals getting some pureed foods. He enjoys eating. Lucas at 8 months old is beginning to almo...

 Dear Family & Friends, Thank you so much for your prayers and messages. Lucas didn't get worse overnight and the doctors let me know that they think he's actually over the worst of the virus he has and is safe to recover at home. I am so relieved! It's so hard to not imagine the worst, and am still trying to relax after getting home. Lucas is in really good spirits despite his coughing.  We've had a slew of appointments this last month and added on a couple of diagnosis with little Lucas. Audiology - mild hearing loss in his left ear (which may get better as he gets older). They said it most likely has to do with his ear anatomy that is likely retaining fluid which impairs hearing. Nutrition (Feeding) Specialist - he had a swallow study done a couple weeks ago. He is aspirating slightly when he eats, which is the smallest amount of liquid getting into his lungs. So the solution is to thicken his food. Interesting for sure, but it works! This, however, is disappoint...